augmentative and alternative communication

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Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

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Melissa DeMoux

How Augmentative Communication (AAC) Can Help During Holidays

Who doesn’t love a good Christmas story? Tales of fun and festivity and family are a vibrant part of the season. This really is a wonderful time of year. But some festive moments can be more difficult than others. When augmentative communication is part of your everyday life, holidays can be a little bit more tricky. That’s where these stories become more than just stories. A handful of families of children who use CoughDrop for AAC have decided to share their experiences, showing ways AAC helps them have a happy holiday. Maybe their Christmas communication adventures will inspire others to engage more fully in helping holiday voices to be heard and make this season a little more merry. 1. Rockin’ Around the Christmas Tree. “I think one of the most important things we do is to make sure our daughter has access to her device as much as possible. She surprises us with how creative she can get with using it. On the way home from buying a Christmas tree, our daughter said “Like, Forest.” She doesn’t have Christmas tree on her speech boards, and it was neat to see her figure out a different way to tell us she had a good time.” “As we were decorating the tree, I found the coinciding button for each item as we put them on (star, candy cane, gingerbread man.) Our son was pretty funny about that and would wait impatiently for me to finish hanging each object so he could hurry and find the next one. “ 2. Sing a Christmas Carol. “One thing we do every year during December is go caroling. In order to include our oldest daughter, we have recorded our younger daughter singing some Christmas songs. We change them so they’re ever so slightly lower to match our older daughter’s voice, and then put them on a button on her device so she can sing with us. It’s been so fun to see her face light up when we go caroling and she can sing along with the family.” “Music is my son’s thing, and he has an obsession with Mannheim Steamroller, but he was getting frustrated when I couldn’t figure out which song he wanted to hear. We use the Amazon Echo to run a lot of things in our home, so we actually programmed in his top 5 songs, and he can push a button that says “Alexa, play ‘Deck the Halls,’ by Mannheim Steamroller,” and boom. Alexa listens and plays the song. Much less frustrating, and he gets to be independent.” 3. Have Yourself a Merry Little Christmas. “Holiday gatherings tend to be noisy and overwhelming. For the most part our child does well with crowds, but sometimes she gets overwhelmed and it’s important to her that we are observant to what she’s feeling. Taking her on a walk or out to the hall is a common occurrence and allows her to be a part but also get a break. We’ve learned to be OK with missing out on some things when it’s going to be too hard on her.” “Our son hates the unexpected, so before we do anything out of the ordinary (have family over, go for a drive to see lights, etc.) we always show our boy what we are doing, and try to be as specific as possible. Not just “someone is coming over,” but “Grandma is coming over in her white car. We are going to eat dinner.” For some reason, if he sees it laid out on his speech board for him rather than just hearing it verbally, his anxiety seems to be less. It also gives him a chance to respond (usually with “I want Doritos,” but still…)” Happy Holidays! May your season be filled with the voices of those you love, however they communicate. We want to hear your story. Become a Mighty contributor here .

Melissa DeMoux

Augmentative and Alternative Communication (AAC) on ABC's 'Speechless'

Just recently, ABC premiered its new prime time show, “Speechless.” But this isn’t just any new comedy. This sitcom is woven around the life of a nonverbal teenager with cerebral palsy (played by Micah Fowler) who uses AAC (augmentative and alternative communication). While the show will likely bring some laughs and (hopefully) great reviews, the importance of this primetime entertainment endeavor goes much much deeper than a few chuckles and the occasional guffaw. Here are some of the reasons the show “Speechless” really matters. 1. People with disabilities are the largest minority group in the United States: According to the US Census Bureau, one in five Americans have a disability. But you might notice there is not similar representation in the world around you. Is one in five actors disabled? Is one in five politicians disabled? Now, it’s true, not all disabilities are visible and many who face disabilities struggle coming out into the world on a regular basis. But it seems this group which makes up a large portion of the population is shadowed to a great degree, and much of that may stem from a lack of acceptance. Bringing awareness to the lives of those facing disabilities helps legitimize their struggles and move them closer to the mainstream of society. 2. It opens the jar of AAC awareness: Many people don’t even know AAC exists. And even if they know it’s a thing, most people have never really seen someone use it. When we do think of AAC we often think of autism, and it’s true that nearly half of those diagnosed with autism are nonverbal — but AAC is not just an autism tool. Think of the dozens of diagnoses that can include speech impairment. Aphasia, cerebral palsy, ALS, dementia, depression, stroke, Parkinson’s, cancer, traumatic brain injury — and the list goes on. AAC is a solution for many people, and the more the world is exposed to its function and benefit, the more it can become understood and accepted. “Speechless” is a machine that can help make that happen. 3. Speaking of AAC, “Speechless” might just bring AAC to those who need it: If we are honest, there are plenty of people and families out there struggling because they (or a member of their family) cannot speak, and not all of them know AAC is an option. Can you imagine the excitement of a mother who has been trying to help her voiceless child when suddenly she sees a solution on her TV screen in primetime? This show is a comedy, yes, (and there will be plenty of situations to laugh about), but that doesn’t mean there is nothing serious about the topic. Bringing the idea of AAC to the world — and especially to families who could benefit from it — is serious business. 4. The main character of the show actually has a disability: “Speechless” is the story of a family centered on a mother fighting for the rights and needs of her 16-year-old son, JJ, who has cerebral palsy and is nonverbal. One of the beautiful elements of this show is that the actor who plays JJ, Micah Fowler, actually has cerebral palsy. While his condition is not as severe as JJ’s, what better way to bring depth and conviction to the role than by having lived it yourself? To add to this, Scott Silveri, the show’s creator, grew up with a brother who had cerebral palsy and was nonverbal. His experience touches every underlying piece of the foundation “Speechless” is built on. 5. It helps people see that different doesn’t mean broken: “Speechless” frames a disabled character in the role of hero rather than a person to be pitied (which has kind of been the norm in the past). Even from the trailer, it is obvious that JJ is a strong character with opinions, ideas, and desires. He is not just a place filler to sit by quietly and accept viewer’s sympathy. Audiences can relate to him, and that is powerful. This isn’t a show about a “disabled” kid. It is a show about a kid and how he maneuvers life. Just because JJ doesn’t have a voice of his own doesn’t mean he has nothing to say, and if we can connect with that idea in a sitcom, imagine what a beautiful movement it could launch into the real world. 6. Finally — and most importantly of all — families are families no matter their struggles: Some families face the very real life challenge of addressing the needs of a disabled member. It may be that one member necessarily receives more attention and care and that may leave hurt feelings and pain. It may be that other family members feel embarrassed or scared because of the issues. But that doesn’t make them any less a family. Families support and encourage each other. Families fight and argue. Families love each other fiercely. Whether they work through emotional issues, death, divorce, heartache, addiction, disability or any other trial, family life is not always easy — but it is real and it is incredible, and we should all be willing to see that. It isn’t often that we hold our breath and hope for the very best when a new sitcom is parked in the spotlight of primetime — but this is one of those times. Here’s hoping that one cute, funny, TV show about an AAC user just might help to change the world. “Speechless” airs on Wednesdays on ABC.

Melissa DeMoux

How to Build Trust With a Nonverbal Child

I have a back yard pool. I also have a niece with Rett Syndrome, who is nonverbal, non-ambulatory and really loves the water. Last summer we invited her and her siblings over several times to splash around and enjoy a swim. On one occasion, my niece was tired when she arrived, so we let her sleep. When she woke up, I went in to see if she wanted to get in the pool. Because she can’t vocalize, my niece uses eye gaze (in addition to an augmentative communication device) to communicate and this time she communicated a pretty intense “no!” She almost screamed it at me with her eyes. Wait, “No?” I was surprised. She normally adores the water. And because I was surprised, I made a ridiculously naive choice. I didn’t trust the communication that had taken place between us. No, I didn’t shove her into her suit and dunk her in the water anyway, but I did call in my teenage daughter (who spends a lot of time with her cousin and is great at understanding her messages) and asked her to verify that I had understood the message correctly. I had. My niece said “no” and she meant it! But that one foolish action undermined every ounce of my communication with my niece that day. In fact, she wouldn’t really interact with me for the rest of the afternoon And can you blame her? Imagine if someone called in an outsider to verify the clear message you had given them. Would you be anxious to talk to that person again? When a person communicates in a way that is less familiar, it is easy to doubt and question and wonder if we received the right message. And to be honest, that’s fair. As we are learning to engage with someone who communicates differently, it is fair that we recognize there is a learning curve. It is fair for us to take time to learn the nuances of language unique to that person. It is fair for us to ask further questions, to clarify meaning, or say, “I think you said ‘no,’ is that right?” But one thing we cannot do is break the trust of that communication bond. Two people engaging in conversation, whatever the circumstance, are creating a contract with one another. It’s an invisible handshake of sorts signifying that you matter to me, what you think matters to me and I care about what you have to say. However, all of that can vanish like smoke if the bond of trust — that responsibility between people to share and be vulnerable so that together they can build something, support one another and grow — isn’t deeply valued and nurtured by those involved. This is true in any communication. But it may be especially true when communication itself takes steady, focused effort. When it takes extra time and energy to compose your thoughts, it becomes vital that those who hear them don’t overlook them. We discredit the message as well as the person sharing it when we ignore or disregard what is said. True communication requires trust. The mode of communication, verbal speech, eye gaze, sign language, augmentative and alternative communication (AAC), matters much less than the message that is expressed. And that message only really matters if there is trust on both ends of the words. A version of this post originally appeared here at My Cough Drop. The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

Apple Short Film 'Dillan's Voice' Shares How Autistic Teen Dillan Barmache Uses Technology to Speak

Dillan Barmache, a 16-year-old with autism, always had a lot he wanted to say. Now, with some assistance from his iPad, he’s sharing those thoughts with the world. In a short film released on World Autism Awareness Day called “Dillan’s Voice,” which was created by Apple to celebrate Autism Awareness Month, Barmache tells the story of how he always wanted to connect with others, but had difficulty communicating what he wanted to say. That all changed when he began using his iPad to type out his thoughts, which are then read out loud with an augmentative and alternative communication app. “Having a voice has changed everything in my life,” Barmache says in the video. “No more isolation. I can finally speak with the people that love me. I can say what I think and let them know I love them, too.” Barmache’s use of this technology first made headlines in 2014, when he  delivered a middle school graduation speech at the age of 14. Apple also released a follow-up video called “Dillan’s Path” starring Barmache, his mom Tami and his therapist/communication partner Deborah Spengler, who explain the importance of remembering that someone who isn’t making eye contact or using their voice is still an individual who deserves to be understood. “Not being able to speak isn’t the same as not having something to say,” Tami says in the video. As Barmache said in an interview with Mashable about the film, “The iPad allows me to be seen.” Watch “Dillan’s Voice” below: https://www.youtube.com/watch?v=oMN2PeFama0 And the behind-the-scenes follow up “Dillan’s Path: https://www.youtube.com/watch?v=UTx12y42Xv4